Last night I was on Marc Rosen, Nick Hale and James P. Wagner’s blog talk radio show Human Potential. You can listen to the show by clicking on the link provided. The show focused on “The Importance of Allies.” I was really honored to have been asked on the show, particularly given my past and the things I once believed about autism and my daughter. I certainly did not begin this journey as an ally and so I am filled with a great deal of gratitude when told there are those who think of me as one now.

One of the things I forgot to mention last night as we talked, was this idea I’ve had ever since that day when I found Julia Bascom’s blog, Just Stimming, and specifically her post “The Obsessive Joy of Autism.” It’s an idea I’ve tried hard to put into practice these past few years. The idea is that because I made so many really awful decisions about my daughter, I needed to make a “living amends” to her.

The idea of a living amends is that as long as I am alive the only true amends I can make that will have any lasting impact, that has any chance at countering at least some of the bad choices I made, is to do everything in my power now to live my life differently. A living amends is different from an apology no matter how heartfelt that apology may be. It is an ongoing commitment to change, to be open, to be willing, to have humility, to learn, and to behave differently as a result of this new-found awareness and commitment. This is what I promised myself and my daughter just over two years ago when Julia’s blog opened my eyes to a different way of viewing my daughter’s neurology.

Since then I’ve had time to contemplate all of this and believe my role as Emma’s parent is to support her, encourage her, cheer her on and do everything in my power to make sure she feels empowered and supported to be all that she can be. I do not ever want either of my children to be who they think I want them to be, or who anyone wants them to be, for that matter. My job is to help them figure out who they want to be and then give them the support to help them be that person.

It is also this thinking that continues to drive me to do all I can to change how the world views autism. I don’t mean that to sound as egotistical as some might take it. I do not expect, nor do I believe I have the power to change the world’s view, but I do believe each one of us can and does make change happen one person at a time. There is a ripple effect that then occurs and that ripple effect repeated many times over does have the power to change what no single one of us can. There is a saying – together we can do what neither one of us can do alone. Or as Helen Keller is quoted as saying, “Alone we can do so little, together we can do so much.”

Julia Bascom’s blog is a perfect example of this. How many, like me, were radically changed as a result of her words? How many people then took her words and began to live their life differently? How many then altered the lives of their children because they now presumed them competent? How many? I’m guessing the answer is more than just a few… that’s the ripple effect in action!

My fabulous husband, Richard Long, has edited the videos of Ari’ Ne’eman’s and Emma Zurcher-Long’s presentation April 2nd at CoNGO (The Conference of Non-Governmental Organizations in Consultative Relationship with the United Nations).

As Richard edited Ari’s terrific speech, Emma was in the room looking at the iPhoto library I keep on my computer, which is near the computer Richard was editing on. At one point Ari describes the Autism Speaks video when a mother describes (in front of her non-speaking autistic daughter, who attempts to hug her mother several times as she talks) how she thought about driving off the George Washington Bridge with her autistic daughter strapped into the back seat, but doesn’t, for the sake of her other child who is not autistic. As Richard had taken a still shot of Ari just at that moment, he needed to edit out the pause that was caused by the still shot and so had to repeat this portion of the video over and over and over.

Emma and I have discussed this video before and though I’ve not shown it to her I wondered whether she was ever in the room when either Richard or I watched it. By the fourth edit of that particular section, I looked over at my daughter who showed no outward sign of upset and whispered, “Emmy, is this upsetting you?” (I know, talk about asking the obvious…)

I am painfully aware that by writing about this I open myself up to all kinds of judgement and criticism, but I believe my insensitivity and slow response is an excellent example of the general malaise society has regarding messages like this one that Ari discusses and that are so cavalierly displayed with regularity not only by Autism Speaks, but a great many organizations and autism experts, which are then repeated in the media. If none of us are able to admit ignorance and our less than ideal reactions, but only point fingers at others, there will be no conversation and little will change. So I’m willing to reluctantly admit that it took having that section on repeat before it occurred to me to get my intensely sensitive daughter out of the room to discuss the Autism Speaks video in more detail.

This idea that our children and people (of all neurologies) hear these things, but because those who cannot communicate through spoken language are therefore thought to not be able to understand what is being said, is one of the more destructive assumptions made. And what about those who do speak, are their feelings not important? These kinds of messages, stated both publicly and privately without thought of the impact this has, encourages prejudice and intolerance, focuses on the suffering, not of the child, but of the parent because of the child, only fuels anger and fear. Meanwhile Autistic people’s feelings are ignored, their response and reactions to such messages are considered, if at all, of little importance.

“Come Emma, let’s go in the other room.” I suggested. Once outside I asked Emma if she wanted to discuss the video Ari was referring to. Emma wrote, “The video has a mom who is lost and cannot rationalize hope.” Then a little later Emma wrote, “Autistic people are not viewed as able beings, this view makes us suffer.” Read that again –

“Autistic people are not viewed as able beings, this view makes us suffer.”

After Ari’s terrific talk, Emma and I were introduced. Watch Emma writing her final sentence regarding autism and acceptance, which says it all…

Tuesday night I received a message from Jess of the blog – Diary of a Mom – telling me she wasn’t feeling great, was supposed to get on an airplane the next morning to come to New York City to give a presentation, along with Ari Ne’eman, co-founder of ASAN (Autistic Self Advocacy Network) at CoNGO (Conference of NGO’s) in consultative relationship with the UN. She asked me if I’d be able to step in if she still felt awful Wednesday morning. I told her, not to worry, “we’ve got this,” urged her to drink liquids and get lots of rest, but that I fully expected her to wake feeling much better and that none of this would be necessary.

Fade to the following day.

Jess texts me to say she’s feeling wretched, definitely has the flu, there’s no way she’s going anywhere and has contacted the person who invited her to speak to tell him she can’t make it, but that she’s asked me and is hoping he’s okay with this change in plans. So we wait to hear from him and I go about my day, trying as best I can to not think about it.

Three hours before the event I was able to check my email and see that I’d been given the green light. I had a few things I needed to do before I could even think about what I would say, but because of an earlier conversation I’d had with Erich who organized the event, I felt I had a pretty good idea. Basically I intended to introduce Emma and begin by reading her A Letter to the World followed by Emma Discusses Awareness, a quote from something Emma wrote about Acceptance just a few hours before and ending with a question to Emma, “would you like to add anything?” An hour before the event I was in a panic, while Emma was cheerfully singing and dancing to Donna Summers, wearing her pretty party dress which she chose specifically for the presentation.

We arrived and Ari gave a terrific speech about autism, acceptance, the reason calling a group of people “burdensome” and an “epidemic” is hurtful and problematic and then it was Emma’s turn. After I read Emma’s words about “Awareness” I said, “I asked Emma earlier today what she thought about awareness versus acceptance. Emma wrote, “I am aware of many things, and so are you. Acceptance takes more dedication.” I paused and then turned to Emma and said, “Do you have anything else you’d like to add?” I held her stencil board and gave her a pencil. Emma wrote, saying each letter as it was pointed to, “Yes. Autism was not something parents wanted to hear, but I hope that will change when more people meet someone like me.”

Applause.

I intended to post the video of the whole thing here, but our camera had a different idea and when we returned home, excited to see the footage, nothing had been recorded. And because we thought the whole thing was being recorded we didn’t bother taking any still shots either. So other than a few photographs of Ari, we got nothing. (Insert sad emoticon.)

Regardless, Ari and Emma rocked and I’m guessing at least a few people came away with a very different idea of what autism is and isn’t. And if I’m right then it was worth every second.

First there was the evaluation. The therapists, the psychologist, the questions. Everyone arrived with their little bag of toys that remained untouched by session’s end. Some tried to interact, others just observed, but all, eventually, turned to us to ask pointed questions. Questions meant to gather information, but that felt like tiny daggers, cloaked in kindness, laced with concern. They jotted down things we could not see, little bits of information they would, no doubt, refer to later, once back in the safety of their office.

Meanwhile we were in the midst of it, with our child who behaved in ways we couldn’t anticipate and often did not understand. None helped us with that. Their reports finished, their conclusions made, their notes and jottings summarized into a single word – autism. Delivered to us by phone, we were told, like a psychic delivering a premonition, the cold, hard “truth”. Our daughter’s life, suddenly bled of joy, like so many leeches placed on a feverish body, draining her of all vibrancy. Her bright future no longer bright, she was categorized. Her deficits itemized and highlighted, her strengths dismissed or ignored, the solution, the remedy, the therapeutic interventions, the “behavior modification” programs could now begin. If we were lucky she could be trained. She could be “modified”. She was young, we were reassured. There was still time. We were congratulated for having caught “it” so early. Early intervention was key, we were told. Intervention…

That was the beginning. That was the beginning. Instead of reassurances, we were given dire statistics, useless advice, asides about inner strength, courage, even “god” was evoked with alarming frequency. People learned of our news. Carried along on the same wave of terror, they tried their best to conceal what they really thought. Some were more successful than others. Some, couldn’t help themselves, in an ill-conceived attempt to prop up, they said things like, “I don’t think I’m strong enough to have such a child…” or “I wouldn’t be able to handle it if…” or simply “How do you do it?” and with each, the darkness crept closer, enveloping us in arms of sadness and pity. The darkness became familiar, soon, without realizing it, I had embraced it and found others who felt similarly.

What I would have given to have had my Autistic friends there with me during that period when everything was so scary and the unknown loomed before us like a dark impenetrable wall. What I would have given, for someone to say, “You are frightened now, but they do not know, they do not understand, they may mean well, but they cannot help you. You see, they are coming at all of this from the perspective of their own limited neurology. They cannot see beyond what they believe to be true. But there is another “truth” and it is one they are unable to tell. The words they use will only lead you down a path you must reject. It is a path that will descend into more fear, more terror. It will not lead you and your child to anywhere you want to go. Come with me, instead. Walk with me. Walk toward the light.

In my ever evolving fantasy of – What if? – I imagine all my friends… my friends who are Autistic, some of whom do not speak, some who do, some have similar interests as my daughter, others do not, but all… all share her neurology… and it is towards them that I walk. It is with them that I surround myself. It is with them that I choose to be among, because they know. They know what it is to be Autistic. They put beauty in the word “autism”. It is their faces, their words that I think of when I think about autism and my fear is vanquished. Fear, now replaced with pride and hope and joy that my daughter is part of such a caring, loving group of people; I am relieved. A community who has come together to care for each other in a world that continues to ostracize, segregate and criticize, this is the community that stands with their arms open wide, in acceptance, in celebration of all that my daughter is and will become.

Yesterday Richard wrote a wonderful post on his blog entitled ~ Happy Father’s Day. In it he talks about being a father and how having children has changed him and his life. He ends the post with, “To all our children, thanks for making our lives matter!” I love that. That’s it, right there. That’s the feeling I’ve had, but couldn’t find the words to so beautifully or succinctly express.

Richard also wrote, “…We got a beautiful boy, Nic. Eighteen months later, we got a beautiful girl, Emma. One of each, as they say. We got “one of each” in another way, too. One autistic, one not.” I read that and smiled, because it’s so true. We have been fortunate enough to have a child of each sex AND of two different neurologies! Three years ago I would not have been able to write any of this, I was still in the – Autism is tragic – mindset. But happily all of that has changed. Some people object to those of us who have chosen to celebrate our child’s neurology. They say we are sugar-coating what is real and difficult and makes it seem less serious than it is. I disagree with that thinking. I think we can still acknowledge the massive challenges our Autistic children face in this world, while still celebrating who they are and the beauty of their specific way of thinking and being.

I do not, for a second, believe that my daughter has an easy time or that she will not face all kinds of things a non Autistic peer would not have to deal with, but I do not need to increase her challenges by not accepting her, believing in her and celebrating her, exactly as she is, now, in this moment. Adding my expectations, despair and ongoing critique and comparison of her, to the very real issues she must cope with on a daily basis does not make her life easier. And I really want to make her life easier, not harder. I’d like to be the person who champions her, makes the bumps she will inevitably face a bit less bumpy and help her navigate some of the twists and turns of life, by giving her acceptance and unconditional love for every aspect of her being.

I keep thinking about all our children who have trouble speaking, how when they are able to communicate in some way, either through typing or speaking, we non autistics are far more likely to listen and assume intelligence than not. I keep wondering what would happen if all our time, money and energy were spent on finding ways to help our children communicate through typing and other AAC devises, instead of on cures; would we see a shift in society’s perception regarding autism? Or would all those people dismiss their words because they are written and not spoken? Amy Sequenzia writes about this ‘here‘.

You see, we were one of those families who pursued the bio-med route. For years I tried all kinds of things, thinking we could cure. As long as I believed in a cure, everything else took a backseat. What I didn’t realize was that accepting and celebrating my child, fully and without amendment was the answer I had been looking for in all those doctors and specialists who claimed cure remedies. The remedy wasn’t a cure, the remedy was celebrating the child I have, exactly as she is – that’s the remedy.

*The title of this post is said in a joking, not exactly sarcastic way, but certainly not in a serious way. Throw in an eye roll as you read and a knowing grin, and you’ll get it!

So much to tell you, but where to begin?

For Mother’s Day my wonderful husband decided he would interview me on his radio show and asked if I wanted to invite a couple other moms to come on the show too. “Yes, please!” I said and promptly invited my friends, Ibby Grace of the blog Tiny Grace Notes (AKA Ask an Autistic), Paula Durbin-Westby, who has two blogs, one with her name as its title and the other – Autism Acceptance Day (which is a terrific resource filled with interviews among other things) and Lauri Swann Hunt of the fabulous website and blog Ollibean, where both her son Henry and Amy Sequenzia often post among many other wonderful writers. The show aired last night at 8:30PM – 10:00PM Eastern Daylight Savings Time and has been archived ‘here‘ for those who would like to listen. We do not have a transcript of it yet, but my fabulous friend Alyssa of the blog, Yes, That Too, suggested we break it into ten minute chunks, which means we need eight more people to volunteer. Anyone who is so inclined can contact me here or at emmashopeblog@gmail.com and we will get a transcript written!

I meant to write a post about all of this yesterday so anyone who wanted to listen live, could, but Richard came down with some sort of stomach bug that kept him up for the better part of the night and Em woke up in the middle of the night complaining of a sore throat. When I went to her she was burning up, so I stayed with her for the rest of the night. By yesterday morning, which was also the first day of my “play date with jewelry” trunk show, I realized, I was not going to be able to keep all the necessary balls in the air. It was that moment when you realize the reality and what you had envisioned, were not meshing even remotely and so priorities needed to be set. Nic, who was off early to go on a three-day field trip, made it out the door without mishap. A doctor’s appointment for Em was secured. Joe, Em’s devoted, dedicated and all around amazing therapist, was called in for reinforcements. Richard was checked in on and given liquids between preparations for my trunk show.

By the way, the show continues today, for those who might be interested in playing with jewelry and seeing my Transitions Collection, which I’ve finally gotten up on my Ariane Zurcher Jewelry website, and joining me to play with the real thing and so I can give a live demonstration of all the various possibilities, many of which the website does not yet have or do.

So given that the day was not proceeding as optimally as planned, it was kind of fitting and perfect that Richard, albeit, groggily, insisted that the radio show (dedicated to motherhood and all that entails) must go on as planned! So it did. And other than a couple of minutes when Richard and I were inexplicably tossed out of the show, it was great fun, everyone was wonderful and I think Paula Durbin-Westby may need to seriously consider hosting her own radio show in the foreseeable future! As I said at the end of the show, it is these Moms and women like them, who have helped me be a better mother to both my children. I am so lucky and very, very grateful.

It’s taken me decades to figure out that whenever I am angry, fear is lurking. All kinds of people talk about the association between anger and fear, but it was not a thought I was able to appreciate. It’s still not the first thought I have when I am angry about something. It’s not even the second thought. In fact, I’m lucky if it’s something I can remember at all when I’m angry. Yet, if I look back on all those years when I was so very frightened of my daughter’s diagnosis and what I assumed that meant for her future, I see how linked the two were. But it was the fear that grabbed me by the throat and no matter what I did, it seemed unaffected and unwilling to let me go. It was the fear that made itself known to me; the anger was far more subtle and insidious.

“When you sense a threat your mind generates fear and anger. The fear you generate is part of a flight response from your physiology. Anger is the emotional energy you generate for the fight against that perceived threat. What can be confusing is that your mind creates fear and anger even when the threat is just imagined.” ~ Pathway to Happiness

I understood things like the above paragraph. In a calm state of mind, it made perfect sense that my anger was rooted in tremendous fear, even if imagined. What did the future hold for my daughter? How was she going to get through life? How would we be able to keep her safe? How would she fend for herself? Would she be able to fend for herself? Who would take care of her once we were gone? Fear. Fear. Fear and more fear. And then, without even realizing it, I would find myself furious. Enraged. And my rage found the perfect target. Autism. Autism was what I was furious with. Autism was what the problem was, so it stood to reason that if I could remove it, all would be well. So this is what I set out to do. Except that my daughter happened to be Autistic. But if I didn’t say it that way I could continue to separate the two. I could continue to tell myself I was fighting the autism and not her. I could continue to believe that my anger with autism would not affect her.

“Anger is the natural emotional reaction to what the mind and imagination are doing. The way to overcome anger is to change how the mind imagines stories and how much you believe them. When the mind imagines painful scenarios you naturally produce anger. To reduce and eliminate the anger it is necessary to shift the stories that the mind imagines.” ~ Pathway to Happiness, Understanding Anger

That quote more than any other sums up exactly what happened. I had to change the story that my mind was imagining. Instead of thinking – my daughter is locked inside an autistic cage that I need to find the key to free her from – I had to examine everything I thought I believed and start from scratch. I had to rethink how I viewed autism, my daughter and how the two were completely intertwined and one. I had to dissect all my preconceived ideas about autism and Autistic people and what I thought that meant. I had to be open to other ideas about it.

For me that began with reading books. First books like Representing Autism by Stuart Murray, Unstrange Minds by Roy Richard Grinker and Autism and Representation Edited by Mark Osteen and then I found blogs written by Autistic people, see the Resources page on this blog. From there I began developing relationships with Autistic adults, not just the occasional interaction, but real friendships. People I have grown to love deeply. I had to find people who were non-speaking, or spoke intermittently. I had to find people who were obviously Autistic and couldn’t “pass”, I had to spend time with those people. And what I found was that far from being miserable, these people were living their lives, doing things, had found purpose and meaning and were active in their communities. The very things I had been told could not, would not be possible for my child.

“Between stimulus and response, there is a space. In that space lies our freedom and power to choose our response. In our response lies our growth and freedom.” ~ Victor Frankl, Man’s Search for Meaning

And so I found I had a choice. I could choose to continue to live in fear of autism and all that people were telling me Autism meant or I could choose to embrace my Autistic child, learn, enjoy and let go of all that anger and fear as it came up, as it continues to come up. Each time I feel fear and anger, and I do on a daily basis, I now know I have a choice. I can fall into the fear and anger or I can step back from it, realizing it’s a mirage, realizing that as painful and real as it feels it is not a fact, it is a construct of my thinking and I can sit with it and not react to it. Because my fear has me running away and my anger has me shouting, either action keeps me apart from others. I have learned that the answer to both is to do something else. And that is this – walk towards instead of away, speak lovingly instead of shouting and pushing away.

“Will she be okay?” This was the question that went unanswered for the first nine years of my daughter’s life.

“Will she be okay?” I asked every autism specialist, neurologist, pediatrician and anyone else who seemed vaguely knowledgable. This question actually had almost nothing to do with the child I saw before me and everything to do with how I felt. I so wanted reassurance. I so wanted and needed someone to tell me she was going to be okay, whatever okay meant. Whatever world “okay” occupied, I wanted to know, really know that my child was going to be embraced and fully in the “okay” of it all.

“Will she be okay?”

Like the children’s story about the baby bird who’s fallen from its nest and asks all manner of creatures it meets “Are you my mother?” I desperately wanted someone to put their arm around me and say those seemingly magical and reassuring words – “Yes. I promise. She’s going to be just fine.” But none did. So on I went, searching, trying every therapy, remedy, every crazy combination of vitamins, diets, homeopathy, naturopathy, healer, energy worker, cranial-sacral therapist, shaman, neurologist, developmental pediatrician, speech therapist, occupational therapist who held out the promise that all would be okay if only I did whatever it was they believed would make her “okay”.

“Will she be okay?”

When we finally ended our campaign to cure our daughter, our campaign to help her accelerated. But this didn’t happen in a vacuum. We had support. And the support we were given came from other Autistic people. In retrospect, had I known my friend Ibby, I would not have asked “will she be okay?” Had I met Tracy Thresher, Larry Bissonnette, Jamie Burke, Jennifer Seybert or any of the other people I’ve had the good fortune to physically meet, I would not have felt the need to ask repeatedly whether my daughter would be okay, because I would have known she already was. That question would not have occurred to me to ask, because these people, many of whom do not speak or more often than not do not speak, or as in Ibby’s case speak, but when stressed, is unable to, are living their lives fully and they certainly know joy. Each of them has grown up in a society that underestimated them. All of them have been doubted and had to prove their intelligence over and over to those who are unwilling to see the evidence before them.

“Will she be okay?”

We, as a society, must stop forcing people we deem different or less than to prove their worth. We, as a society, must look inward and start asking ourselves, not “will my autistic child be okay?” but “what can we do to accommodate Autistic people so that all can flourish and be included?”

In the end, that’s all I really want for both my children. I want them to feel a part of a society that supports them.

“Will my child be okay?”

She IS okay. Right now at this moment. It’s up to the rest of us to recognize this.

There’s a great deal of talk about acceptance regarding autism this month, which is a wonderful shift from all the talk about “awareness”. As I think more about acceptance I am aware of how often I think about “embracing” as in embracing all that each of us is, without trying to mold ourselves to be something we aren’t. What if instead of doing everything in our power to force our autistic children to behave like some imaginary and impossible non-Autistic version of themselves, we instead encouraged them to be the very best Autistic them they could be? The same way we do everything in our power to help our non Autistic children be the very best they can be.

Isn’t that what all of us are trying to do? Aren’t we all trying to be the very best we can each be? So what does that look like, how do we do that? Well, by recognizing what we’re good at, for starters. One of my brothers is an astrophysicist and the other is a micro-biologist. My mother was a chemist, my father a financial advisor and I don’t have a “science-y” gene in my entire body. In college I did everything in my power to avoid both science AND economics. These subjects are of no interest to me. Were someone to tell me, well, you know, your most successful same age peers all love and excel at these topics, therefore you need to apply yourself more to them, and I was then forced to take these classes and was not allowed to pursue my love of art, drawing, design, literature and writing, I would be miserable.

I don’t want to spend my life crunching numbers, looking at stock portfolios, and peering through microscopes. None of that interests me. Hand me a book on quantum physics and I fall asleep. The only good that comes from giving me books like that to read is the money I save on unfilled Ambien prescriptions. I will never be, nor do I want to be, a scientist or economist, I accept this fact completely. I don’t feel ashamed by my lack of interest. I don’t feel this is something I should feign interest in. I have other interests and talents; I focus on those and am very happy. That’s what we all do. We avoid the things we aren’t so great at, and often have little interest in, and focus on what does interest us and where our talents lie. If we were lucky we also had parents who encouraged, supported and cheered us on in pursuing those interests.

Why should any of this be different for our Autistic children? I don’t want Emma to try to be someone she isn’t. I want Emma to be the very best Emma that she can be. Which means I need to support her interests and help her find the best way to communicate. Verbal language is tough for her, typing seems to help her access a part of her mind, that verbal language cannot, so we are doing all we can to support her typing. How she communicates is not as important as that she be able to. She loves to perform and sing loudly, so we have a variety of microphones and an amp that she can use to hone her singing skills. She loves her books, so in between reading her favorite Miss Spider book, I am teaching her about arachnids, what they eat, how long they live, how many legs they have and how they spin webs. Spiders are actually kind of fascinating. Even though Emma loves the Miss Spider books because one of them includes an electrical storm (lesson plan coming on that topic soon!) and Miss Spider has a great many big emotions, which Emma likes to act out, complete with wringing her hands and pretend tears and cries of anguish, there are a great many topics I can piggy back on, to teach her about things like – the weather, electrical storms, any and all big emotions, pretend and real, etc.

I want to encourage her to explore all of these things and more. Last night she wanted to watch a really bad movie that she’d seen her brother Nic watching about a two-headed shark who attacks a group of teenagers. And despite my misgivings about the content (and just awful quality of the movie in general… The acting is phenomenally bad, the shark is the best thing in the movie) it was age appropriate and I figured I could turn it off if it got too gory and awful. There was a great deal of emoting and blood curdling screams, which Emma thought hilarious. She kept saying, “Watch out, the shark is going to come and eat you! Oh no! He’s going to bite your arm off!” Then she pretended to bite me. Bad movie, great time was had by all AND I now have another lesson plan I intend to create regarding sharks!

Be the very best YOU, you can be. Now that’s the kind of acceptance I can get behind!

When my daughter was diagnosed first with PDD-NOS and later with autism, I easily fell into the ~ I-completely-love-and-accept-my-daughter-but-I-do-not-accept-her-autism ~ mindset. At the time, this seemed perfectly logical and I didn’t think a great deal more about it. Autism was the “problem” after all, not her, and once we got rid of the autism, everything else would fall into place. When people said the word “acceptance” and “autism” in the same sentence I nodded my head yes, while my mind carefully separated autism from my daughter, plucked the word from the sentence and placed it into a box before closing the lid.

It took a very long time for me to understand that my daughter and autism were not to be separated. And it wasn’t until I began developing real friendships with Autistic adults that I stopped trying or wanting to separate the two. Acceptance is much more than tolerating something or saying – okay I won’t actively fight this any longer. Acceptance is an embrace, it’s understanding and actively celebrating difference, it’s about looking inward and asking questions. It’s about self-reflection and digging deep into the darkness of preconceived beliefs and being willing to be wrong. It’s about saying – I don’t know and I don’t understand, will you help me? It’s about being vulnerable and not “right” and it’s about the excitement of discovery and being curious and open to different ways of being and seeing the world. To me, it is the most exciting way to live life.

To say I’m grateful to all those people in my life whose neurology falls under the Autistic label, would be a vast understatement.

Today at 4PM eastern time, Brenda Rothman of Mama Be Good, Melody Latimer of AS Parenting and I will be speaking about Parenting Toward Acceptance. The webinar can be found at the following link – http://www.icdl.com.

I must interrupt my previously planned programming regarding the recording of Barb’s audio book, I might be you and mention the “light it up blue” campaign from Autism Speaks, as April is fast upon us. I know a great many, really well-meaning people will be “lighting it up blue” on at least one day in April, but I urge you to reconsider. For those of you who love reading links to other relevant posts on the topic, here you go…

Autism Acceptance Day ~ This blog was started by Paula Durbin-Westby and originally began as a way to counter the “awareness” that Autism Speaks suggests it is promoting.

Tone it Down Taupe This April!! ~ From Radical Neurodivergence Speaking an alternative to the “light it up blue” campaign! This is a MUST read and it’s also very funny.

For those of you who can’t cope with yet another link, let me try to explain. “Lighting it up blue” seems like a perfectly benign and thoughtful thing to do, yet what is meant as a token gesture of caring and thoughtfulness, is actually anything but that. Lighting it up blue is an ad campaign by Autism Speaks. It is less about bringing any real awareness about autism or the lives being led by those who are Autistic and everything about branding and promoting that brand that is Autism Speaks. It is a brilliant campaign. Most people who “light it up blue” believe they are showing solidarity and support to Autistic people. Most people would be shocked to know that Autism Speaks is the single most powerful organization promoting fear of autism by using language to describe autism as a “terrifying epidemic,” “a crisis” and Autistic people as “burdens” to society.

This quote is taken from Autism Speaks website:

“Acceptance
Ultimately, you may feel a sense of acceptance. It’s helpful to distinguish between accepting that your child has been diagnosed with autism and accepting autism.”

This sentence encapsulates everything I once believed and thought about autism and my autistic child. This idea is incredibly destructive and insidious in it’s seemingly benign wording, but it is anything but that. If we separate out the person from their neurology, what do we have? How do we do that? What exactly does this mean? This sentence from Autism Speaks is exactly what is wrong with the organization. You cannot accept your child while NOT accepting their neurology. It is not possible. Yet this is exactly what I believed for many years to the detriment of my child’s well-being, to the detriment of her self-esteem, to the detriment of who and what she is. But I didn’t know that.

“Lighting it up blue” is not helping any of our children or those who are Autistic. The only one who is benefiting from this campaign is the organization who came up with it – Autism Speaks.

So before you head to the hardware store to find some blue light bulbs or open your check book, please, reconsider. Think how you would feel if this campaign was about your neurology. Because as Barb Rentenbach has so beautifully written in her book that I am currently recording the audio version for,

My friend Steve Summers wrote this a few days ago. I asked Steve if I could repost his words here and he gave me his permission.

“Today I feel tired. —

Tired of being rejected. Tired of being ignored. Tired of being excluded. Tired of being treated like an outcast. Tired of being treated like a misfit. Tired of feeling like others look down on me for being different. Tired of being expected to try and act ‘normal’ to have a ‘normal’ life. — I am not ‘normal.’ I am Autistic. Tired of people who think that just trying harder will make Autistic people ‘more normal.’ — Would you tell a blind person to try harder to see? Would you tell a paraplegic to try harder to walk? Would you tell a colorblind person to try harder to see the colors that they can’t see? Tired of people who don’t understand Autism and who don’t make any effort to learn about Autism so that they can cure their own ignorance. Tired of people who refuse to accept Autistic people just as they are. Tired of people who presume incompetence. Tired of neuro-bigotry. Tired of the silence of others. Silence is *not* support. Want to help us? — Listen to Autistic people. Make an effort to learn about Autism. Educate yourself about what we go through each and every day. Learn about how negative attitudes make us feel. Practice Autism Acceptance. Accept that we are different, not less. Accept that we are different, but *not* defective. Don’t try to make us into a poor copy of your idea of ‘normal.’ Accept that we are okay to be ourselves — just as we are. Accept that we are humans with feelings just like everyone else. Accept that Autistic rights are human rights. Presume our competence. Don’t avoid us, include us. Most of us have social anxiety. Please be kind and reassuring to us. Please reach out to us. We won’t often make the first move after suffering from a lifetime of rejection, exclusion, and being bullied. Please practice inclusion. I am Autistic and I want to be valued and accepted for simply being me. ~ Steve Summers”

Steve is my friend. I am so glad I know him. I value our friendship. I enjoy our conversations.

Yesterday I wrote about acceptance, specifically acceptance of one’s Autistic child by a parent. Parents who do not accept their “child’s autism” often feel criticized and bristle at the perceived implication that they do not “love” their child, “correctly”, “in the right way” or “enough”. I know how completely uninterested I was in the idea of acceptance when I was engaged in an all out battle with Emma’s autism, intent on extricating her from its gnarled grasp. (This last sentence was very much in keeping with how I thought of autism at the time.) What I didn’t consider, what I didn’t know to consider, was Steve and every single person who is autistic who feels the way Steve does.

My inability to accept my daughter’s autism impacts her. Just as I cannot extricate the Autistic parts of her, I cannot pluck out the “autism” from how she sees herself. My non-acceptance, as well intended, as well-meaning as it was, was still felt by her as a criticism of her. But I didn’t know that at the time.

I think we, human beings, forget how pervasive and destructive our ideas about others are. If we are in the majority, our influence, the reach of our opinions are even more destructive. We say, oh but I love her, I just hate the way she walks, talks, the sound of her voice, the color of her skin, eyes, hair. I love her, but I hate the way her mind works, how long it takes her to get dressed, the way she eats… No really, I DO love her. And we do. We feel tremendous love. I loved my daughter all those years I was fighting her autism. I did. I absolutely did. I fought her autism BECAUSE I loved her so much. But then I met people like Steve and Julia and E. and Kassiane and Bridget and Savannah and Laura N. and Sam and Amy and Gareeth and I read what it was like to be brought up by parents who didn’t accept their “autism” and how it felt. And I began to understand. I was able to hear what they were saying and I began to see the connection.

Thank you Steve for allowing me to print your words here. Thank you for writing this. Thank you for helping me parent my daughter differently, so that in ten, fifteen, twenty years from now maybe, just maybe, she will not feel quite so tired.

My friend Shannon Des Roches Rosa posted a great piece regarding understanding acceptance on Thinking Person’s Guide to Autism the other day. I wanted to write a comment, but had to think about what she’d written and then wrote a long, epic length, rambling comment, so lengthy that when I went to submit it I was informed I’d “timed out” and lost the whole thing. But it got me thinking…

Whenever I think of acceptance the “serenity prayer” comes to mind – “…grant me the serenity to accept the things I cannot change; courage to change the things I can; and wisdom to know the difference.” This prayer was what I repeated to myself each and every day for years after we were given Emma’s diagnosis. “Courage to change the things I can” was what I clung to as I doggedly pursued treatment after unproven treatment. One of the single biggest stumbling blocks for me in accepting my daughter’s “autism” (I write it this way, because this was how I thought of it, as something separate from her) was that I believed it was within my power to change her autism. I thought I could remove it. As long as I continued to hold onto that belief, I couldn’t accept her autism or the idea of her as an Autistic individual, she was Emma who was diagnosed with autism and therefore, my thinking went, could also be diagnosed withOUT autism. These two points were key in my thinking. Anyone who suggested I not think of my daughter and autism in this way were disregarded.

I no longer think in these terms. But I read the often heated exchanges between parents who accept autism and their Autistic children, and those who maintain they accept their child, but do not accept autism. Interchange the word “accept” for “love” and things start getting really volatile. None of us welcome anyone who suggests we do not love our children. And truthfully, this is where, I think, the disconnect happens. I think this is less about love and more about having a different understanding of what Autism is. If autism is seen as completely negative, (something Autism Speaks has perfected to a science by using words such as, affliction, epidemic, crisis and tragedy) this horrible thing that causes my child to writhe in agony, an “affliction” with no redeeming qualities, coupled with the belief that autism is something that can be removed, in fact has been removed by many parents who have gone on to write memoirs about their triumphant courage to change the things they can, then what parent wouldn’t welcome their child relief from that?

But if Autism is seen as something complex, woven into the very fabric of a human’s being with a wide range of attributes as well as challenges, all of this becomes far more complicated. It was this idea, so beautifully described in eloquent detail by Julia Bascom in her blog Just Stimming that made me pause. Her description of the challenges and joys of being Autistic were what made me stop and reconsider everything I thought I knew and believed. As long as we hold to the view that our child is locked inside a seemingly impenetrable shell called “autism” while listening to that seductive, whispering voice assuring us that we can break through that shell if we just try x, y, and z we will struggle mightily with the idea of acceptance.